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Abstract
Background: To promote effective genome-scale research, genomic and clinical data for large population samples must be collected, stored, and shared. Methods: We conducted focus groups with 45 members of a Seattle-based integrated health care delivery system to learn about their views and expectations for informed consent in genome-scale studies. Results: Participants viewed information about study purpose, aims, and how and by whom study data could be used to be at least as important as information about risks and possible harms. They generally supported a tiered consent approach for specific issues, including research purpose, data sharing, and access to individual research results. Participants expressed a continuum of opinions with respect to the acceptability of broad consent, ranging from completely acceptable to completely unacceptable. Older participants were more likely to view the consent process in relational—rather than contractual—terms, compared with younger participants. The majority of participants endorsed seeking study subjects’ permission regarding material changes in study purpose and data sharing. Conclusions: Although this study sample was limited in terms of racial and socioeconomic diversity, our results suggest a strong positive interest in genomic research on the part of at least some prospective participants and indicate a need for increased public engagement as well as strategies for ongoing communication with study participants.
Acknowledgments
The eMERGE Network was initiated and funded by NHGRI in conjunction with additional funding from NIGMS through grant U01-HG-004610. The authors express their gratitude to Group Health Cooperative members who took part in these discussions. The authors thank Kelly Ehrlich, Darlene White, Cheryl Wiese, and Dorothy Oliver for their help in carrying out the focus groups. This article was supported by ADPR grant U01AG006781.